1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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Do MEs cause CFS?

Discussion in 'General ME/CFS Discussion' started by Jonathan Edwards, Aug 10, 2014.

  1. Leopardtail

    Leopardtail Senior Member

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    that was interesting, but a slight curved ball. It's not talking about the process of creating Methyl groups, but about their application to genes.
    Richard van Konenynberg did produce a fair amount of work, but it was never 'peer reviewed and published'. I am busy for a couple of weeks, but happy to email the stuff when I can find it.
  2. Ninan

    Ninan Senior Member

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    MeSci likes this.
  3. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I don't recall you saying this before. Have you worked formally in the field, or just have relevant qualifications?
  4. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I understand that at least one person here is already doing it.
  5. Ninan

    Ninan Senior Member

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    I've had IV saline for OI. Works fine as long as I'm not in my worst state (when none of my other medications work). Then none of my OI treatments help. This study says it may be because of altered plasma renin activity. Dr Bell says IV saline doesn't work for those who are the least and most affected by ME.
    MeSci likes this.
  6. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I'm one of the few sufferers with hypertension. I have just created a poll to get an idea of how common this actually is in ME.
    Ninan likes this.
  7. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Post #2 in this thread quotes:

    [​IMG]
  8. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Not sure if my blogpost here relates to what you are talking about, but if you look at the section 'Connections between leaky gut and autoimmunity' you will find a link to a paper about how leaky gut may lead to autoimmunity. Here is the link to the paper.
    ahmo likes this.
  9. ukxmrv

    ukxmrv Senior Member

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    I had saline infusions are part of another drug treatment (with IVIG) and didn't notice any positive changes in my health so I have not re-visited that idea again.
  10. thegodofpleasure

    thegodofpleasure Player in a Greek Tragedy

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    MeSci likes this.
  11. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I wonder what @Jonathan Edwards thinks of this article. The author seems a bit 'alternative' - not that I necessarily see that as a problem, but I am having trouble finding website info about him or his 'Wellness Center' in Florida.
    Snowdrop likes this.
  12. mellster

    mellster Marco

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    Hmm, could it be interpreted that there is an initial strong response with much release of Interferon-gamma, but as the condition progresses, that immune response weakens?
  13. rosie26

    rosie26 Senior Member

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    Thanks Alex. This really makes sense to me. Now where do I go from here. How do I get tested and treated ?
    Last edited: Aug 15, 2014
  14. Jonathan Edwards

    Jonathan Edwards Senior Member

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    Yes, I realised that this was what was bothering the back of my mind although I could not put my finger on it at first. A primary problem with the autonomic system would not seem to get the time scale of symptoms right, I guess.
    WillowJ, MeSci, Leopardtail and 2 others like this.
  15. Jonathan Edwards

    Jonathan Edwards Senior Member

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    It seems to be a list of all the fashionable and not very rigorous ideas about autoimmunity rolled into the usual rag bag - the sort of thing that scores of trainees will write to get themselves a publication without having any in depth knowledge of the problem. Nothing actually adds up to a proper mechanism. There are a lot of accurate individual facts there but the overall picture is very naive, I think. Handle turning I would say, and maybe advertising!
    MeSci, Kati, catly and 1 other person like this.
  16. Leopardtail

    Leopardtail Senior Member

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    part2 links to part 1R, correct URL below
    http://iaomt.media.fnf.nu/networks/iaomt/IAOMT_talks_Rich_Van_K._2011__Part_2.pdf
    Helen likes this.
  17. Leopardtail

    Leopardtail Senior Member

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    was a response to Tanya, anybody meant 'in her medical team'....
  18. Ninan

    Ninan Senior Member

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    I've always taken that delay as a sign of some kind of immune activity or inflammation. The time between overexertion and reaction (PEM) is about the same for me as the time between overexertion (lifting something, doing too much garden work) and pain for my dad who has AS.

    It differs too: The more I've overdone it, the longer it takes until the crash, and of course, the worse it gets. If I've done a little bit too much I get worse later during the day. If I've done way too much it can take four or five days, or more. During which I feel just fine (well, for having severe ME) or even better than usual. Then I crash, badly. It's tricky that way.
    Last edited: Aug 15, 2014
    WillowJ, justy and voner like this.
  19. Leopardtail

    Leopardtail Senior Member

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    Qualification only, doing my first piece of research now. Still at a very analytical / preparatory stage looking into energy management and the interactions of cellular metabolism and the endocrine manifestations of ME. Essentially it's a very complex network analysis. Like pretty much all researchers don't discuss it too permit later publication.
    justy likes this.
  20. alex3619

    alex3619 Senior Member

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    Since we don't really understand the problem, then treatment tends to be hit or miss. Its my Lemon Rule again. KDM does however attempt to deal with this, but LPS from the gut is only one of a range of potential issues. Testing is theoretically easier, but I am unsure how common commercial LPS testing is.
    Last edited: Aug 15, 2014

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